My sister put it appropriately when she said after coming home from Virginia, I would be posting more, but right now I was trying to keep my plates spinning in the air.
Where to begin… Kids went to camp. First Micah went to senior high camp/ Shyoh and Ian went to Junior high camp. Faith and Mazie got their hair braided and went to two Bible schools, just two days for each one, due to a few crashing plates…
I caught up on bookwork except for meeting with the CPA.
Benjamin would drive us nuts by eloping. The last time, Ray was here, I put Josiah down for the night. Ray changed Benjamin’s diapers (yes he is still not potty trained) then laid Eli down. I am talking two minutes max…we lost Benjabie…the top to bottom quick search of the house: the kids disperse to their assigned areas and we scour the house as one goes outside to the road…Ray went to the road. Benjamin was almost out of sight on the road pulling his yellow wagon; his eyes glued to the power lines.
I ordered some door alarms that night. Finally we are all on the same page that this is a needed and necessary thing to keep our family safe. The special one needs us to do this for him. We will have to engage and disengage the alarm many times I know, but if it keeps him alive and safe…
Eli has been falling so much and hitting his head that I am worried something is wrong with his balance again. He seems as if he is fine for a while, then he has vertigo. I finally heard from the lawyer regarding his subsidy/medical card for adoption and it is approved and has been since May 2 but I do not have the card in hand…seeing is believing.
The cardiologist looked at Josiah’s reports then we had a bunch of tests… Adoption is weird. They would not give me physical papers since the name needed redacted (they take out the identifying information for the baby). Sorry but with a special one I am not looking at the name!! I want to know information about the child and his health for his own well-being!! Something needs changed here and fast. Why the papers are kept while they redact might be the difference in something very important…as it is here!! What they told me was much different than what the report said!!
He does have an OPEN foramen ovale, 3mm. The cardiologist was concerned about unequal pressures in the ventricles. He said it is normal for newborns but the pressures should be almost equal right now and they are not. But most concerning is the left and right pulmonaries are small… so we need to go back in one month and re measure these parameters to make sure that things are improving
And we are no longer attending church. The older children can if they wish, but we are once again at a crossroads. Churches depend on order. Benjamin elopes. Benjamin has melt downs…and he cannot stay locked in the nursery anymore; he is four. We have been trying to transition him into the children’s church class, but the teachers like order and Benjabie does not fit in the orderly box. The first Sunday I went downstairs with the children after Josiah came home… after looking in the class and he was in a chair all by himself in the back of the room with Shyloh trying to engage him…and he was just a puddle: the stress of transition created the water/the mud/and the flailing around in the mixture. We were trying to take small bites of it so that he could handle it. They wanted him to be either in the nursery or the class and not bounce between the two. This is our fourth child that does not fit in the box.
Soo…God loves us and we are doing church at home: God will surely meet us here!! He does every day and we have more than two or three to gather together… He sees it.
Until you are a special family you don’t see how the struggling all week; at the store, at the pool, at the park, in the car, at the restaurant, at the doctor’s; see the looks, hear the continuous comments about how your child “should be” doing thus and so…and then on Sunday, when you want to lay your burden down, have others come along side and pray and love on the children that society will not or has trouble accepting…and you get the same response as the world…Churches there is something wrong. There are many, many families of special needs children that no longer can attend church because the order in the church is more important than the children that come in and sit on the pews…
But at least I know God loves them and if He is the only one who comes along side us and supports us…then that is enough. He is sufficient.